Ramblings

069_3726elvis-presley-posters1Elvis was on Max Cable TV. I was in a hotel flipping through the channels. There he was with his own private audience. In his black leathers, sitting, singing and  playing his guitar. He snarled, the girls screamed and bopped. I bopped along with them, though screaming may have been slightly out of place in a hotel so I refrained. What on earth was I doing. I have long since flat lined as far as hearing goes but here I was bopping along to Elvis even though I couldn’t hear him. But somehow I could. Whether it was the way he moved, swayed or shook his leg, the music seemed crystal clear in my head. Was I going nuts? Nah, it was just my phantom hearing coming into play.

Elvis can do that. He has a way of grabbing an audience and evoking memories. They showed old clips of him. He had dancing girls, dancing men and choreographed fight scenes in time to the music. As he moved to the music, as the dancers moved to the music … as his face changed and his hips swivelled a whole range of sounds came to my head …   guitar rifts, saxophones, trumpets and even Elvis’s distinctive voice were clear in my head. I lost my hearing between the ages of 8 and 10 and my memory of his music is still clear. In our day we used to religiously watch his movies during the school holidays. Bad as they were we loved them. Can anyone remember the Monkees TV Show ?- Mickey rocked –  Or the Beatles cartoon? – Ringo was everyone’s fave.  There goes my phantom hearing again – “Hey, Hey for the Monkeeees.”

What one hears through phantom hearing  will depend on the sounds that they have experienced. Phantom hearing has been likened to having a limb amputated. You still feel it there and moving, the nerve endings are still sending messages to the brain. Every deaf person will experience deafness in a different way. For example those born Deaf and who have immediate families who are Deaf will generally not experience deafness in the same way as someone who has lost their hearing later in life. David Wright in his book, DEAFNESS, acknowledges this fact when he says, ” Very few are absolutely deaf. Their experience must  necessarily be different from that of the severely deaf, the partially deaf and the hard of hearing. The partially deaf, it seems to me, have the worst of both worlds. They hear enough to be distracted by noise but not enough for it to be meaningful.” (Wright, DEAFNESS, 1969)

Naturally the experience of deafness will vary according to the age of onset. Similarly the ability to cope with deafness will be different as well. Those who have experienced deafness from birth will not fully understand the grieving and heartache that accompanies a person who suddenly loses the sense of hearing that they have relied on all their life. Likewise those that have heard and valued seemingly trivial things such as the birds singing outside the window at sunrise will find it hard to understand the relative insignificance and dismissal of such things from those who have never heard it.

I once had a discussion with a Deaf man from a large Deaf family. I compared his experience of deafness with my own. I spoke to him about his thought process. Because I have heard, when I think I hear my voice is in my head. My voice helps me to analyse, verify and decide. If I am hungry a voice works in my head sorting through the options that I have – ”  A sandwich perhaps? Or a piece of fruit? Maybe a grease attack at the local fish and chip shop?” A little voice in my head sorts through all of the various options at my disposal. But what of my Deaf friend who has never heard? How does his thought process work? I asked him as much.

He thought about this for a while. Surprisingly he found it hard to explain. I asked him if there was a little man in his head that signed to him. He said that this was the case sometimes and at other times it was just a series of visual cues. For example when deciding what he might like for dinner visions of various food might come into his head, fish, fruit, bread etc. He might then visualise the signs that would allow him to explore these options further – “Bread maybe, no” or “Fish, grilled or fried?”  In this sense his thought process was not all that different from my own except it was more visual while my own was more verbal. Of course when I am verbalising in my head I have visual images of what I want to eat too. Different from my friend? – yes, not really, maybe … It was an interesting conversation and one of the very first times that I really analysed what being deaf meant.

But it is not just deaf people who experience deafness in different ways. Hearing people do too. Recent articles of The Rebuttal have been highly critical of Dr Bruce Shepherd and Professor Graham Clark for the misinformation they spout about cochlear implants. Shepherd, I believe, is a parent of deaf children. Clarke , I believe, had a deaf mother. Clark became a Doctor and ultimately pioneered the cochlear implant. I read somewhere that his mother inspired him to go down this path. He wanted a cure for his mother. Shepherd, being a Doctor, perhaps was frustrated that he could not “fix” his children’s hearing loss. The experience of these two imminent Australians, probably and ultimately, shaped their attitude towards deafness. Deafness to them is a sad and tragic affliction that requires fixing at all costs.

What of a child of a deaf adult? CODAs we call them. Some of them have parents who lost their hearing after giving birth to them (Not from giving birth to them). Some of them have parents who are deaf and who predominantly speak. Others have parents who only sign. My own children have parents that move from signing to speaking at will. Some will have been brought up predominantly around other Deaf people in the Deaf community. Some will witness their parents or parent severely isolated within hearing families and the hearing community. The experience of a child of a deaf adult is infinitely variable. I asked my own three boys what they thought of deafness and all three gave a different answer! “Sad” said one, “The same as anyone else.” said another, whilst the third shrugged his shoulders and said “Dunno.” The first later recanted his sad comment claiming that he had misheard me. He said he thought I wanted to know about death! Pushed he said – ‘You can make me deaf if you want. I wont care.”  Needless to say I was not convinced.

If three boys from one family whose parents are deaf can have such varying views then how can we expect society as a whole to have any kind of consensus. And this is the crux of the matter. People experience deafness in different ways. For some it is a positive way of life. For others it hinges between positiveness and frustration. Many just see deafness as the pits and causing complete turmoil in their lives. For others it is to watch on in frustration as a loved one struggles to fit in and overcome the isolation that deafness can inevitably cause. For others it is to see parents living life fully within the Deaf community but struggling within the hearing community – and themselves wondering which community they belong.

For a parent the deaf child is often the first time they have had to confront deafness in any shape or form. Not surprisingly they want their kids to be like them. They want them to be able to hear and speak because it is all they know. So called experts like Shepherd, Clarke and  many an audiologist will feed this turmoil that hearing parents must deal with by providing biased information based on what they see as the WAY! Billy Graham has nothing on these evangelists.

And yes I am rambling. I am rambling because I am trying to make sense of recent events. the cochlear debate rared its ugly head again. Ex aspiring Prime Minister, Brendan Nelson – who is thankfully about to retire, saw fit to host a symposium on deafness and exclude Deaf Australia and the views that they would bring to the table.  Deaf Australia have protested and indeed Deaf people throughout Australia were mightily offended by his actions. For those with little knowledge of deafness the conflict probably seems bewildering. Many will favour the oralist and audist view simply because it is all they know.  Will we ever console these different views or are we forever doomed to be waring factions with our own vested interests.

I don’t know. But in the meantime Elvis lives on in my head. His music and voice forever in my memory. Do I want to be able to hear it again independent of my phantom hearing? Yes cos its what I know but at least I respect and understand all the other scenarios that deafness gives rise to.  But that’s another ramble for another day.

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24 thoughts on “Ramblings

  1. Pahntom hearing can be rather unsettling can’t it ? I can recall most tunes pre 1985 nothing after, so when an oldie tune comes on, it is very unnerving for me to ‘hear’ the music, the singing etc… often the backing and tone of singing too, which I scarecely recall I did when I had hearing ! I’ve then found myself with tears after, very unnerving, and probably what stops me being a deaf person, the constant reminder I wasn’t always a deaf person.. then I hanker after hearing again, it’s a form of mental cruely the brain acts out isn’t it ? Only by switching it off can I ignore it, but then I will be doing something and the tune pops into my head again, no escape from it, and I am not sure I want that…. it’s a comfort…

  2. MM … Nah just see it as an interesting part of the overall experience of being deaf. But yes makes me hanker a little too. But I can understand that for some it would be a painful reminder of what was.

  3. I’ve not found deaf to be ‘interesting’ experience sadly, stressful, yes ….. I keep thinking, is this it ? then think if this is all there is, I want a CI lol…. except they won’t let me have one 😦

  4. Thanks for a very interesting analysis of what it means to hear and to have memory of hearing when deaf. I like to see such intellectual conceptualizations in a field where we constantly battle controversy and opinion.

  5. Brilliant piece Gary, I’m most impressed by your thoughts being articulated here.

    I had never ever thought about the phantom hearing concept, nice one. One of my few experiences with music was my brother playing Skyhooks, Pink Floyd & Led Zepplin on his stereo (we shared a bedroom while we were growing up). I strongly remembered a few songs from Skyhooks so after getting the implant I was eager to listen to them again after a long absence.

    I recall “Living in the 70s”, or how I heard it when I was a kid and listening to it with the implant was very different to my memory of the song. Evidently my hearing back then missed a few instrumental pieces but a very interesting experience all the same.

    One note about the symposium, I’ve been trawling the net for more information about it but only found a bunch of photos of K-Rudd from AAP (link provided below). Even my journo contacts who receive media releases from the government each day has (to date) not received anything related to this symposium.

    http://www.aapimage.com.au/Search.aspx?search=PM+KEVIN+RUDD+DEAFNESS+SYMPOSIUM%26(IMPORTDATE%3E20090819)&viewtype=Grid

  6. Skyhooks Liam? What songs? Toorak Cowboy? Smut? Women in Uniform? Motorcycle Bitch? Party To End All Parties? You Just Like Me Cos I’m Good In Bed? The song Women In Uniform, is the audio equivalent to a drag show!

    But seriously, I have the same experiences…. I watch musicals without the sound. I watch TV without sound, with subtitles of course, and all that prior experience with audio, fills in the gaps.

    But I will have to admit, there’s fun to be had with audio, but you would know all about that Liam, wouldn’t you!

  7. I think you make an interesting point here, and not the one you intended. To me, people like you are not deaf. Yet you’re here pushing hard for “Deaf” ideals while labelling others as “oralist” or “audist”.

    I was born deaf, I’ve been deaf all my life, and I’m deafer than just about every deaf person, and yet I am not “Deaf” because I don’t agree with what hearing people have told “Deaf” people to do.

    Where did “Deaf Culture” come from? Oliver Sacks. A hearing guy. Who are the management of “Deaf” groups? Hearing people, ex-hearing people, and people who have most of their hearing.

    I think most people who really are deaf just get on with their lives… without making groups and clubs and focal points that make everything in life all about lack of hearing.

    Our ears never worked, so why bother? That’s a true deaf perspective!

  8. You make a good point Steve, but it is not strictly true. You can become Deaf, at a later stage in life.

    Without going into this discussion in great depth, people form groups, because they share things in common. If people of various ethnic, religious, gender, sexual, et al, form groups for one reason or another, e.g. sports, mothers groups, etc, then why can’t Deaf people?

    The focal points of our groups is not merely the lack of hearing, but the shared experiences that come frpm that lack of hearing.

    That lack of hearing has profound effects on people, beyond the technicality of not hearing as well as before, or not hearing anything.

  9. The crux of the matter Steve is that Gary tried to highlight that experience plays a part in how we perceive deafness. Your rather confused response only added weight to what he wrote.

    The problem is not so much oralism and sign language but the lack of undestanding of each view from opposing groups. Clark and Shepeherd and that appalling Cora Barclay ad are offensive and Audist because they belittle sign language and mislead.

    Sacks didn’t coin the concept of Deaf culture he wrote a book showing why sign language and Deaf culture were valid and important. One suspects that you have had trouble fitting in with the Deaf at some point, have been rejected and are bitter.

    Either way your view is based on what you experience which was the essential core of the article. Your response validated the article in a way that you never intended.

  10. Hi Stewie,

    Thanks for the predictable response, which I’ve heard (ha!) so many times from hearing people who do not understand why I, as a deaf person, do not agree with their pro-Deaf message (which is largely invented by hearing people).

    I am genetically deaf and related to many other deaf people, so there’s no issue of rejection. I notice that many deaf of deaf simply do not participate in the Deaf groups – except when catching up with some friends or family.

    I agree that experience determines how we perceive deafness. When people are secure in their identity as deaf people (and I have known no other way), they have the freedom to explore and express the spectrum of views.

    I also think that it’s quite OK to exclude a group with an agenda from a conference which is trying to define standards for all deaf people – as they are – regardless of how strong and vocal that group can be.

  11. Inherent hearing memory is what prevents ‘deaf’ people being ‘Deaf’. Of course you cannot cross the cultural divide, it is pointless to try, why do it ? At best you can bridge the communication side. Once you have had hearing there is really little as good a substitute for you.

    It makes you what you are, the same as being born deaf does that for them, but you won’t see them agonising about where they are at, there is no hearing for them to lose. I think deaf culture then is strictly for those who know little or nothing about hearing or verbal usage. Horses for courses, and to use another tired cliche’ you can lead some to water but….

    I’m not part of deaf culture and never will be, you cannot expect acquired deaf to be otherwise, anyone who thinks going deaf is the ticket to the deaf cultural show, is going to find, they are just spectators to the main event….. As for perceptions of deafness, it is either something to overcome and live with, or a living and daily nightmare. Cue those who cannot understand why deafness HAS to be overcome… Perhaps a 12 month course of hearing for the born deaf might do it ?

    • Bottom line folks, if you really need to be blunt, is that hearing is like your tonsils. not really needed. Having once been hearing I can say this with some conviction. Humans can communicate without sound and have the technology at their disposal to not need to speak with each other or hear anything. We could all be deaf in the world and the world would function beautifully.

      Hearing, when you really think of it, is a luxury, nice to have but if your willing to do without, then you can do without it.

      Deaf culture, I don’t know who coined it hearing or deaf, but its a sort of culture or sub-culture of people with like experiences. Within that sub-culture its members will all have varying experiences of hearing. Some a lot, some a little and others only through artificial means and some not at all. Ultimately this is the same as any culture. Arguably no two people see or experience culture in the same way. The diversity within the culture is what helps it to survive and remain interesting.

      So do we need to hear to be part of Deaf culture – NO! Codas are part of Deaf culture but they hear. Later deafened people often join the Deaf community and they add to the richness of the experience. Defining Deaf culture only by the sense of hearing is to belittle it which is what MM and Steve do whether they mean to or not.

  12. Steve,

    It look like you got lucky and fell out of the deaf tree. If I had a large extended family whom are all deaf, then I imagine the need to seek out kindred spirits would not be as compelling as the ones who had to endured communications issue with a hearing family who did not sought to bridge the communciation gap, throughout the formative years. To me, I felt your reference to your deaf genetics background came across smug. Good for you that you don’t share the “hard done by” feeling as some who have discovered their identity later than hoped for. However, since you have been immersed in that deaf environment, is it possible that you possess a lesser sense of social injustice compared to the ones who have faced the “barriers”?

  13. Saltbar; that was a specific response to Stewart’s assertion, which is typical because it assumes that either “you agree with us, or you were rejected” are the only two possibilities. This is known as “framing the argument”, and I simply don’t accept having that imposed on me.

    I agree that it must be frustrating to argue with me, as I can take on the list of qualifiers and tick every box, and still have an opinion that is different from option A or option B. If you want to argue about what I think, you’re very welcome – but you would have to know what I think first.

    If you want to try and disqualify me with arbitrary standards, then you’re on a losing game. And deservedly so, because such a tactic is only for the express purpose of dismissing someone, rather than having to use your mind and consider the range of experiences that people have in life.

    Where it all falls apart is that you hearing people are trying to tell me how to be deaf. Sorry, that’s such a funny situation that it’s hard to build an edifice on top of the ridiculous.

  14. Steve I find your response awfully defensive and confused. Noone has asked you to agree. They have just put alternate arguments. You assume that if someone has once heard then this makes them hearing forever more and that they can not truley be Deaf. At least that’s what I can make out from your constant reference to hearing people telling you that you are not Deaf.

    I am not sure how we would clssify someone who changes religion. From your argument if someone is a Budhist and converts to Islam they can never be muslim because they are inherently Budhist. Makes no sense to me.

    Most people that respond to The Rebuttal are deaf in some shape or form, some part of the Deaf community, some interchanging between hearing and deaf communities. Some are hearing people who have lost their hearing. Some are Deaf people who have lost their hearing too. It is not for me or you or anyone to tell them they are any less deaf or Deaf simply because of the excperience and circumstances that led them to chose the identity that they have.

    If I sound confused it’s because you are making no sense whatsoever or maybe I am just thick. Take your pick.

  15. The post wrote about not being able to make sense of recent events. I explained that it made sense to me. I think “Deaf” groups are run by people with agendas, and are not representative of deaf people.

    As the post itself says, Deaf groups are “waring factions” with their “own vested interests”. This blog previously made the point about hearing CEOs, and failure to represent deaf people as they really are.

    My comment is that even within Deaf groups, there is a failure to represent people who really are Deaf, DEAF, deaf, dEAF, etc. How could you anyway? You don’t have the experience.

    With such a diversity of experience and a failure to agree, I don’t see that there is a perspective being brought to the table. It would be a random outcome driven by whichever group happened to be picked.

  16. Stating you miss your hearing is not belitlling deaf people, if they cannot accept us as we are tough on them. It is right we compare, it is also right to miss hearing, and to suggest it is no big deal losing hearing is simply unawareness, andmaybe upsetting to those who clearly CANNOT accept being deaf. I don’t know about upside-down land, but acquired deaf here get no trauma support.

    Or perhaps you never heard at all… It may get up people’s nose we miss what we had, and say so, it doesn’t make it any the more irrelvant…. Being deaf we are, being ‘Deaf’ or part of a deaf community, the jury is well out….. we don’t sing from the hym sheet, and a lot us are not into religion either… Attempts to label us won’t work. Attempts to declare what we will never be, won’t either, we are all spectators and part-timers, unless we live it 24/7.

    I am determined to maintain any links I have to my hearing past, why should I let deafnesss define me ? or other people ? As your article stated even our brains won’t allow it…. the subconcious tells you, you are a hearing person by culture, even if you are denying that daily elsewhere.. You can fool other people part of the time, some people maybe ALL the time, but you cannot fool yourself.

    I can give a pretty good impression of a hearing/speaking person, because I never forgot where I came from. Immersion into other people’s culture is a recipe for disaster unless you are totally committed, and fully informed before you start…. I can pass as an average deafie too !

  17. I myself am often asked if I am Deaf. I always say no because my values are predominantly hearing. However, that is the decision I have made based on what I know and feel. It is not for me to tell someone who has chosen a Deaf identity, whether they were hearing once or not, that they are in denial.

    To do so, I believe, is to insult the intelligence of that person. That person, like me, has had to sift through the various dilemmas of being deaf and hearing and what they feel comfortable with. Equally it is not for the Deaf to critisizze people who actually prefer hearing and want to be able to hear. Respecting and accepting is the way forward.

    This Steve is where I have trouble making sense of recent events. Clarke and Shepherd reject deafness in every shape and form to the point that they actually mislead. My ponderings were to try and make sense of why they do so. Nor do I beleive its appropriate to censor the views of a group as part of a symposium that is discussing options for deaf kids and their parents. Thats just arrogance.

    But all of this discussion just goes to show that we all are pushing our own barrow, me included. What I am trying to do is find a way forward where the various groups can begin to understand where the others are coming from. In this sense the debate is fascinating so I thank you all for your contributions.

  18. I thought I’d comment on this as I’m late deafened myself. I occasionally forget I’m deaf if I’m daydreaming – I’ll ask someone a question forgetting there is no interpreter and then have a moment of bewilderment when they answer me and I can just see lips moving! Sometimes though I feel very deaf/Deaf. Last week, for example, a couple of us were at an interpreted event and the thing that I noticed was that the most interesting people there all seemed to be signing !
    Maybe just a bad hair day in the hearing world but it is at the crux why some of us aren’t happy with what happened with Deaf Australia not being invited to the symposium on deafness and children. There does seem to be a deliberate thing going on in which professional people such as Clarke and Shepherd are promulgating their message that sign language isn’t worth considering as a communicational means for deaf children. I don’t any of us should be happy with Shepherds view of the deaf child as being a potential “drawdown” on the community and welfare, unless they get a cochlear implant. I also don’t think it much matters whether we are oral or Deaf – there should have been more of us at that symposium – from memory the ratio was about 20 medical professionals to 2 deaf people. Sure Deaf Australia have a pro Auslan agenda – that’s fair enough. Deaf kids and their parents should be getting a range of choices as to how best access language so they or their kids can grow and succeed. They aren’t getting this when they are being steered down one path and Auslan and its promoters are being cut out of the picture.

  19. As you say ‘occasionaly’ forget, we never really forget we had hearing. That’s the fundamental difference we have. As we canot forget, then we cannot integrate either in the ‘Deaf’ world, it will always hold us back. The struggles we have to ‘hear’ is the issue, ‘Deaf’ do NOT struggle, or wrestle with THAT problem, only need sign. Which they have in fair abundance considering they rarely move outside their own areas, whilst we are constantly considering HOW we can move outside the isolation being deaf brings for us. We should accept the inevitable we should move on, but we cannot in most part, as the topic stated, the memories will not let us. It is constantly searching for what has gone and replays sound memories in a continuous loop at times… Sign is just a tool to me, as an acquired deaf person, as is lip-reading. It is hard then to view it as anything else… You cannot take one communication form in Isolation that is what we KNOW about, because it won’t work on the street… I am in mixed mind to support ANY sole mode as a means, for future deaf or those starting now, the world revolves around sound and speech, we have no choices, deaf children will have none. If is a CI, or lip-reading or sign or whatver defa children will have to master ALL Of them to some degree or get left behind. I rather fear culture deaf-wise, is a luxury we cannot afford, we have to eat too.

    • My argument MM is that your experience are integral parts of deaf culture. there are very few within the Deaf community that have absolutely no experience of heatring. perhaps like you and I they have not heard naturally but they have hear d to a degree. the experience of deaf culture is nothing at all todo with hearing or not .. Its about the community, its language, events, stories and the like. I vivdly recall attending a deaf community event for the first time and one of the first questions asked was how Ai went deaf, was I born deadf or went deaf later etc etc. I believe the various experiences of hearing form an integral part of the culture, its relationships and ultimately its stories.

  20. Hi MM, just reading this comment now but I think we experience deafness differently. I do feel deaf, no doubt about it in my mind and being hearing feels like another life I once had. I miss music sometimes but apart from that I don’t miss anything really. My sister, who has recently become fully deaf, has had a similar experience and in both our cases learning sign language helped. It brought us into contact with some pretty happy people who knew how to live life well as deaf people. Not to suggest you should go out and join a sign class but just to comment that there is more than one way to experience acquired deafness.

  21. Steve, I think you are trying to be bit too clever. You come across as dismissive of any endeavours or groups that are formed outside the 100% Deaf realm, or not from pure Deaf family generations, and question whether they are actually Deaf or deaf. Or whatever…. I am not trying to set you up but question why you feel the need to impose elitism and pour scorn? If you want to be condescending and imply that I don’t have a brain, then there is no point in engaging with you. I have not insulted you – just forthright with my views.

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